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Author Topic: The most important person in my life just tested postive for Hep C...  (Read 6621 times)

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Offline concernedhusband

  • Member
  • Posts: 6
I apologize if this is the wrong section. I am thankful this forum exists to help with support and to answer questions.

I just found out this past weekend my wife tested positive for Hepatitis C. We're a younger, healthy couple, and this was a complete shock to both of us. She donates blood regularly and received a packet from the Red Cross explaining her results after donating last month. Sadly they weren't "inconclusive" but were positive meaning she most likely has the virus. From my understanding she could have cleared it herself but that's only about a 25% chance.

She last donated blood in 2015 and was completely clear. Neither of us use IV drugs and our work environments have no contact with needles. She did get a new tattoo in the middle of 2015 from a local reputable parlor. I believe that this is the most likely form of transmission. I'm dealing with a roller coaster of emotions and have no one to talk to about this. I am sad, concerned for my wife, and want justice all at the same time. I want my wife to be treated and potentially cured as fast as possible and I want the owner of the parlor to never be able to hurt anyone else...

From what I've read, legal action against a licensed tattoo artist is almost impossible to win. My wife's wishes are to not pursue said action because she knows it would be a vicious battle open to the public. That doesn't help with my pure anger I am dealing with against the owner.

After hearing my wife's results I went in myself to be tested. I luckily had the most compassionate and understanding health officials I've ever been with. After breaking down emotionally in front of them, not only did the try their best to comfort me, they also offered hope that even if we both were positive there are many successful cases where patients are cured. The PA even discussed how when she started PA school there wasn't a cure and now there are people cured all the time. I even asked about our future of potentially having children and she reassured me that once treatment is completed there wouldn't be any transmission to the child if the virus is completely cleared.

My results for my blood test came back Negative today. While I feel relieved for myself but it doesn't ease my concern for my wife. I personally would rather have the roles reversed because she means that much to me. To see her hurting emotionally and potentially physically pains me to my soul. I don't want the most important person in my life to have to go through this issue.

Currently we are awaiting the results from her secondary blood work. I read that the Red Cross uses the cheaper antibody testing and that it doesn't actually check for the virus. I am trying to keep my hopes up that this was all just a mistake and my wife won't have to go through this terrible event. Sadly I don't think we will get that lucky. She also didn't have a very good experience with her local medical professional. Her doctor treated her completely opposite of how I was treated. She instantly tried to just send her to a specialist and didn't want to draw bloods for a second, more expensive testing. He doctor also told her Hep C was transmitted by body fluids(which we know is false since it's blood to blood) and that she could have got it anywhere. Her regular doctor was extremely cold, rude, and uncaring for this potential issue.


Now we're simply waiting for the results and dealing with the anxiety that comes with waiting. I can't stop thinking about it every minute of everyday. I cannot talk to anyone in my real life and I've been breaking down alone thinking about this whole ordeal. The stigma alone is enough to ruin our lives from those around us. Even if we explained everything, in our area close mindedness would treat her like a leper.

I'm lost. I feel helpless. I feel like I can't say or do anything to help her.
Thanks for listening to my story.

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: The most important person in my life just tested postive for Hep C...
« Reply #1 on: September 07, 2017, 09:13:13 pm »
Concernedhusband, your eloquent post is a gift of support to your wife, as is all of the research you have done. I'm glad you had wonderful health officials and hope that your wife either can switch doctors or will have a kind specialist if it turns out she has active HCV.

The most important things to know now are:
1. Sometimes that initial (antibody) test is a false positive.
2. The antibody test only shows your wife was exposed to HCV, so her immune system made antibodies to it. The antibodies stick around in case she is ever again exposed, but they are not a problem. Only if the next test shows she has a viral load (only if she didn't self-clear the virus) will she require treatment.
3. Today's medicines have almost 100% cure rates, and there are enough different ones that if the first one doesn't cure the HCV, the second can.
4. Today's medicines are very easy (many require taking just one pill per day), and most people experience either no side effects or very mild side effects.
5. Perhaps most importantly, a person can have HCV for many years before it starts to do serious damage, and the liver is very good at becoming more healthy after a cure. In other words, neither of you needs to panic. Also, the PA is right that this won't affect your wife's ability to have healthy children.

Your anger toward the tattoo parlor is very understandable, but given the likely legal and social outcomes, your wife is wise not to waste time and energy suing. I can sympathize with your anger, because I can't think of any way I would have gotten HCV except for the transfusions I received during 1971 surgery. In both your wife's and my cases, the source can't be proven, so there's a feeling of powerlessness that comes from being stuck with the ramifications.

Your wife's future is very bright. Even if it turns out that she has active virus, she'll be cured in plenty of time to remain in good health. And you can continue to use this forum to ask questions about each step, to feel supported, and to vent whenever you need to.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: The most important person in my life just tested postive for Hep C...
« Reply #2 on: September 08, 2017, 09:40:14 am »
Everything Gnatty says is true. There's a cure. It's a good one. You've got this early.

I'm sure things will start to come into focus when the initial shock subsides, but you do need to make sure you have a good dr on your side and start to plan where to from here. Once you have the info you need, you'll be able to plan and move forward. You can turn your anger into action. It's more useful that way.

Are you in the US?

Stay in touch. We've been where you are. And we care.
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline concernedhusband

  • Member
  • Posts: 6
Re: The most important person in my life just tested postive for Hep C...
« Reply #3 on: September 08, 2017, 12:43:27 pm »
Concernedhusband, your eloquent post is a gift of support to your wife, as is all of the research you have done. I'm glad you had wonderful health officials and hope that your wife either can switch doctors or will have a kind specialist if it turns out she has active HCV.

The most important things to know now are:
1. Sometimes that initial (antibody) test is a false positive.
2. The antibody test only shows your wife was exposed to HCV, so her immune system made antibodies to it. The antibodies stick around in case she is ever again exposed, but they are not a problem. Only if the next test shows she has a viral load (only if she didn't self-clear the virus) will she require treatment.
3. Today's medicines have almost 100% cure rates, and there are enough different ones that if the first one doesn't cure the HCV, the second can.
4. Today's medicines are very easy (many require taking just one pill per day), and most people experience either no side effects or very mild side effects.
5. Perhaps most importantly, a person can have HCV for many years before it starts to do serious damage, and the liver is very good at becoming more healthy after a cure. In other words, neither of you needs to panic. Also, the PA is right that this won't affect your wife's ability to have healthy children.

Your anger toward the tattoo parlor is very understandable, but given the likely legal and social outcomes, your wife is wise not to waste time and energy suing. I can sympathize with your anger, because I can't think of any way I would have gotten HCV except for the transfusions I received during 1971 surgery. In both your wife's and my cases, the source can't be proven, so there's a feeling of powerlessness that comes from being stuck with the ramifications.

Your wife's future is very bright. Even if it turns out that she has active virus, she'll be cured in plenty of time to remain in good health. And you can continue to use this forum to ask questions about each step, to feel supported, and to vent whenever you need to.

Gnatty

Thank you for the detailed response. I appreciate the kind words.

We will be switching her doctors as soon as possible after the rough experience with her general practitioner. I feel like my clinic professionals were a blessing to my mind as well as providing extremely fast and efficient health care. I was upset that she wasn't treated similar. The nurse that called me with the results was even compassionate over the phone. She said she wanted to call as soon as possible. 

I'm glad you mentioned the lack of side effects with the modern medicines. After watching family members go through cancer treatments, I was afraid that the hep c treatment would be extreme on her as well.

The cure rate being at nearly 100% is also a huge relief to hear. I always assume the worst and  any bits of hope ease my mind.

The helpless feeling of not being able to get justice for this wrong doing has for sure eaten at me since I see myself as her protector.

My fingers are crossed that it was a false positive or just traces of antibodies with no viral load. Even if the viral load test comes up negative it still angers me she was unnecessarily exposed to this virus by a lazy/careless "reputable" tattoo parlor... They don't deserve to be in business especially not knowing how many other innocent people's lives were changed because they were cheap or careless.

I trying not to let the anger eat at me, but I can't help it. I appreciate you all welcoming me and letting me vent my frustrations. I also appreciate the information you all have shared on this forum. It really means a lot to so many people who are scared and don't know where to turn. 


 
Everything Gnatty says is true. There's a cure. It's a good one. You've got this early.

I'm sure things will start to come into focus when the initial shock subsides, but you do need to make sure you have a good dr on your side and start to plan where to from here. Once you have the info you need, you'll be able to plan and move forward. You can turn your anger into action. It's more useful that way.

Are you in the US?

Stay in touch. We've been where you are. And we care.

Thank you for the reply.

I plan on trying to update this thread with new information as we receive it. It helps me to vent and actually talk to others who have experienced this in their lives. My wife's wishes are to remain silent in our real lives, so it leaves me without the ability to speak to even my closest friends about this. I honestly have a natural embarrassment if I were to speak with anyone offline as well. I think it's due to the stigma that follows something like this and the misinformation about the virus. 

We are in the US btw.

Thank you for the kind words. The initial shock is still there for sure. It feels good to hear that others care and have been in similar situations.

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: The most important person in my life just tested postive for Hep C...
« Reply #4 on: September 08, 2017, 03:46:41 pm »
Concernedhusband, you're in good company here because we or our spouses or loved ones have indeed gone through what you and your wife are going through. As Philly indicates, your anger can be useful. Right now, it gives you the added energy to be extra supportive of your wife as she doctor-shops and goes through the full diagnosis phase (whether or not she has active virus; if so, how much and which genotype, etc.). Then, if she needs treatment, there may or may not be hassles getting insurance approval (if there are hassles, people here know solutions). During treatment, people are often anxious when swallowing the first pill of a new medicine as well as when waiting for results of follow-up tests, so your loving support can be very helpful throughout that time.

Finally, once your wife is in the clear (either because she doesn't have HCV or because she's finished treatment and a test 12 weeks after the end of treatment officially pronounces her cured), the risk of stigma will be gone. At that point, some people, grateful to have their normal lives back, turn their energy towards making up for lost time. Others invest their energy in trying to make HCV awareness and treatment more readily available. The two of you might decide to help strengthen tattoo parlor regulation in your state and help publicize the risks of getting tattoos. Your situation has prompted me to search the Internet to learn more about how tattoo parlors are or aren't regulated. No need to read the following links now, but if you and your wife do later decide to tackle the tattoo safety issue, here are two useful web pages from reputable sources:
Each state's laws collected by the National Conference of State Legislatures:
http://www.ncsl.org/research/health/tattooing-and-body-piercing.aspx
Tattoo health and safety tips by a Consumer Reports M.D. medical advisor:
https://www.consumerreports.org/cro/2012/09/what-to-know-before-you-get-a-tattoo/index.htm

The old HCV treatments were as rough as cancer treatments, but thankfully those days are gone. Glad you will keep us posted. Here's hoping you can still notice and enjoy each day's beauties and joys.

Peace,

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline concernedhusband

  • Member
  • Posts: 6
Re: The most important person in my life just tested postive for Hep C...
« Reply #5 on: September 08, 2017, 05:20:14 pm »
Concernedhusband, you're in good company here because we or our spouses or loved ones have indeed gone through what you and your wife are going through. As Philly indicates, your anger can be useful. Right now, it gives you the added energy to be extra supportive of your wife as she doctor-shops and goes through the full diagnosis phase (whether or not she has active virus; if so, how much and which genotype, etc.). Then, if she needs treatment, there may or may not be hassles getting insurance approval (if there are hassles, people here know solutions). During treatment, people are often anxious when swallowing the first pill of a new medicine as well as when waiting for results of follow-up tests, so your loving support can be very helpful throughout that time.

Finally, once your wife is in the clear (either because she doesn't have HCV or because she's finished treatment and a test 12 weeks after the end of treatment officially pronounces her cured), the risk of stigma will be gone. At that point, some people, grateful to have their normal lives back, turn their energy towards making up for lost time. Others invest their energy in trying to make HCV awareness and treatment more readily available. The two of you might decide to help strengthen tattoo parlor regulation in your state and help publicize the risks of getting tattoos. Your situation has prompted me to search the Internet to learn more about how tattoo parlors are or aren't regulated. No need to read the following links now, but if you and your wife do later decide to tackle the tattoo safety issue, here are two useful web pages from reputable sources:
Each state's laws collected by the National Conference of State Legislatures:
http://www.ncsl.org/research/health/tattooing-and-body-piercing.aspx
Tattoo health and safety tips by a Consumer Reports M.D. medical advisor:
https://www.consumerreports.org/cro/2012/09/what-to-know-before-you-get-a-tattoo/index.htm

The old HCV treatments were as rough as cancer treatments, but thankfully those days are gone. Glad you will keep us posted. Here's hoping you can still notice and enjoy each day's beauties and joys.

Peace,

Gnatty



The last part about noticing and enjoying each day's beauties is something I need to do my best to do again. The concern, worry, and anger have left my mind clouded. I can't focus on work or normal hobbies.

I'll do my best to step back and tell myself this is just another speed bump in life and we'll be back to normal in no time.


Thanks again for the replies and words of encouragement.

Offline concernedhusband

  • Member
  • Posts: 6
Re: The most important person in my life just tested postive for Hep C...
« Reply #6 on: September 13, 2017, 11:55:10 am »
I can't thank everyone enough on this forum. If I could hug everyone that has replied or even looked at this thread I would.

My wife received her secondary tests and she came back negative. She just let me know so I don't have any details. Apparently the Red Cross blood test was a false positive. So I'm not sure if she had been exposed and cleared the virus on her own or if it was a completely false positive/mistake on their end.

Either way the biggest weight was lifted off my shoulders. I'm in tears of joy and can't control them.

This ordeal has put in perspective how life can change in the blink of an eye. I wish I could help more people who have similar issues that change their lives. I like to think I'm a mentally strong person but this showed me how hard unexpected medical problems can break a person mentally as well as physically.

I have also learned to not judge someone immediately if they have a "stigma" virus/disease. Knowing how many innocents have been unfairly exposed changes the perspective of something like this. My heart aches for anyone in a similar situation.

My only question is should myself and wife get blood screening in a few months to make sure 100% we're both okay?


I want to truly thank you all. Many people like to put the internet down in today's society, but it's places like this where the best of the internet exists. I literally had no where else to turn for my questions and concerns. You all accepted me and reassured me of the hope that exists for everyone. Your expertise and simple kind words mean so much to the thousands of people who have no where else to turn.

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: The most important person in my life just tested postive for Hep C...
« Reply #7 on: September 13, 2017, 12:59:37 pm »
Wonderful news! I'm so glad the stress is over for you and your wife.

As for whether to test again, without having seen the exact wording of the original and follow-up tests, I'm not comfortable offering an opinion. Once your wife has found that new, compassionate doctor, she'll receive professional advice about that.

You wrote, "I wish I could help more people who have similar issues that change their lives. I like to think I'm a mentally strong person but this showed me how hard unexpected medical problems can break a person." I assure you that your hard-earned insights could make you a valuable volunteer; you just need to budget time for volunteering like you are probably budgeting money to raise a family. Then be on the lookout for a good match for your skills, personality, and comfort zone. You are clearly a warm-hearted, expressive man who could be a huge help to others experiencing major stressors.

Thanks for your thanks. I was just "paying it forward."

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Online Lynn K

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  • Member
  • Posts: 4,350
  • Get tested, get treated, get cured, fight Hep c!
Re: The most important person in my life just tested postive for Hep C...
« Reply #8 on: September 13, 2017, 05:12:24 pm »
Just to add to what gnatty has said, while we are not medical professionals if the test result that was not detected was the HCV RNA by PCR test which is the test for the hep c virus itself not mearly for the antibodies to hep c then yes she is in the clear and won't need additional testing.

But to agree with gnatty you should confirm this with her doctor but that is the answer I would expect that you both are good to go.

Congrats to you both!
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Philadelphia

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  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: The most important person in my life just tested postive for Hep C...
« Reply #9 on: September 13, 2017, 05:20:21 pm »
Listen to the wise women above, their advice is usually right on the money. I just came in to say CONGRATULATIONS and all the very best. :)
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline Mugwump

  • Member
  • Posts: 761
  • My number of posts means nothing, piscor ergo sum!
Re: The most important person in my life just tested postive for Hep C...
« Reply #10 on: September 14, 2017, 07:46:40 pm »
 :) :) :) :) :) :) :)
All the best in long happy life together free from the stress and horrors of HCV.

Indeed false positive antibody tests are now rare but we are seeing quite a few posting here that seem to have cleared the virus naturally. The real percentage stats of individuals that clear naturally might need to be re visited by the AASLD and the CDC. Again just perhaps there is a simple difference in immune reaction(s) to HCV exposure which explains why some people clear naturally and yet a higher percentile do not.

Eric
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline concernedhusband

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  • Posts: 6
Re: The most important person in my life just tested postive for Hep C...
« Reply #11 on: October 04, 2017, 05:43:41 pm »
Thank you all again. I have been busy and haven't had the chance to respond.

We will be finding her a different general practitioner very soon.

She has been very "it's over, so let's not discuss it anymore" since she was cleared.

I still desire more information.

She was also just called by the local health department who was notified by the Red Cross.
The health department was surprised by the results and were contacting the doctor to review them.

I hope it was a completely false positive even with the antibody test.
Sadly I still have thoughts that the tattoo parlor exposed her and her immune system naturally cleared it.


 

Offline concernedhusband

  • Member
  • Posts: 6
Re: The most important person in my life just tested postive for Hep C...
« Reply #12 on: October 04, 2017, 05:49:07 pm »
You wrote, "I wish I could help more people who have similar issues that change their lives. I like to think I'm a mentally strong person but this showed me how hard unexpected medical problems can break a person." I assure you that your hard-earned insights could make you a valuable volunteer; you just need to budget time for volunteering like you are probably budgeting money to raise a family. Then be on the lookout for a good match for your skills, personality, and comfort zone. You are clearly a warm-hearted, expressive man who could be a huge help to others experiencing major stressors.

Thanks for your thanks. I was just "paying it forward."

Gnatty


Thanks for the kind words. I am exploring a different career path that will hopefully give me the opportunity to help people in stressful situations.

If that doesn't work out I personally feel the need to volunteer more to help people in bad situations.

Just being able to give someone an ear to talk to might help them in some way.

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: The most important person in my life just tested postive for Hep C...
« Reply #13 on: October 04, 2017, 08:30:52 pm »
Glad to hear of your plans. Yes, providing an ear is key.

I hope you'll also be able to skim new postings on the Hep Forums so that if you see someone in a similar situation to what you and your wife went through, your words will provide relief and hope.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

 


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